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16 yr old
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16 yr old

4 yrs ago began have transient binocular vision loss 12-15 x's a day lasting seconds.  6 mos ago, transient peripheal vision loss accompanied by headache pressure at base of skull which has been constant (24/7) since along with nausea, tingling/numbness on right side of body, burning pains in head and right side of face, transient vision episodes, focal gaze staring episodes, twitching, orthostatic hypotension, positive Babinski response (by neuro), fatigue. Never actually loses conciousness, just gets very close to it.

She had one episode ( at different times lasting 30-45 secs) each of: could not spell her name and words came out jumbled.  School nurse noted dilated pupils that would not constrict to light when pressure was 80/44 and headache worse than normal.

However all test fine: MRI & MRA of brain & cervical clean, chest xray, neurological exam (except for Babinski) fine, Opthamologist said eyes fine, echocardiogram, EKG, EEG, Spinal tap, Western Blot Lyme Test, Heavy metal bood test, CBC, Hormone blood test, Tilt Table test showed orthostatic hypotension, peripheal vision test fine.

She does have normal low blood pressure (90/52), she has fibroadenomas in right breast (biopsy showed no malignancy), she has large globular pituitary (endo said normal for teen), Tilt test showed Orthostatic Hypotension (several times 80/28 during test but did not faint), she has mild spina biffida oculta, and Babinski response (neuro said not an issue if all other tests are fine).

I am at a loss as to what to do next.  She did have a new EEG yesterday, but we do not have results yet.  They are ready to write her off to pschological.

Question 1:  Can she have MS with clean MRI and clean Spinal fluid?
Question 2:  Is Babinski response signifigant if no other test findings showing abnormality?


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220917_tn?1309788081
Hi, and welcome to the forum.  We have a great group of people here who will give you lots of information and support.

Your daughter sure has a lot going on for such a young girl!  You must be going crazy!  I'm so sorry.


In brief answer to your questions, YES, someone can have MS with normal MRIs and spinal fluid.  But, your daughter seems to have so much more going on here.  I would not jump right to MS.  This needs to all be sorted out by some very sharp doctors.

And YES, Babinski is a sign that the nerve pathways are in dysfunction.  It does not solely indicate MS, but it IS important.  It can point to many different things, though.  

You said your daughter has seen a neurologist.  What does he/she say?  What other specialists has she seen?  Has she ever had an MRA done to look at her brain blood vessels?

Give us some more information, sit down with a nice cup of tea, and make some new friends here.  Hopefully Quix, our resident physician will be along this evening to shed some light for us.

Take care,

Momzilla*
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199882_tn?1310188142
Hello and welcome to our family.  Wow, I am so sorry that this is happening to such a young person.  I know if it where my child I would be going crazy with worry which I'm sure you are.

I agree with Momzilla completely.  It wasn't until a couple of MRI's before they found lesions in my brain.  They where always clear and finally I was able to use a more powerful MRI machine T3 I think and it finally showed up.  Now from the get go I had a long lesion in my spine.  Have they done an MRI of her spine.

It was because of that one long lesion that they first started talking MS.  Your daughter certainly has most of the symptoms for MS but the sad thing is they are also symptoms for a lot of other auto-immune diseases.  More than likely they will have to weed out different diseases until they find the right one.

If this young lady knows that something is physically wrong with her then do not let the doctors tell her it's in her head.  That is my pet peeve.  That's when it's time to look for a new doctor.  A MS specialist would be my choice.  Hang in there and let her know that you will help her fight this thing.  The support of your family and friends is everything during this time.

I'll be praying,
Carol
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335728_tn?1331418012
I agree with Momzilla in that it is important to know what sort of doctors and specialists she has seen.  It is very important that if there is a possibility of a diagnosis of MS that your daughter be seen by an MS Specialist, not just a neurologist.

The reason for this is that the MS Specialist is trained to see things on an MRI that neurologists are not and they have experience in looking for specifics that neither neurologists or radiologists are.  If she was seen by an neurologist and this neurologist only went by the report received from the radiologist then your daughter has been done a disservice and needs to be seen by an MS Specialist!

I hope that you will consider staying with our Forum.  We have a wonderful group of people here and while we can't make a diagnosis as we are not physician's we can hopefully guide you down the path you need to take to get a diagnosis for your daughter.

Lots of Hugs,

Rena
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306259_tn?1204773075
Thank you for your responses.  She has had MRI of brain & cervical AND MRA of brain & Cervical.  In addition to other blood tests listed: she had ANA blood work to check for autoimmune and connective tissue disorders.  Also spinal fluid was checked for numerous things, not just routine.  

She has seen 2 Neurologists, an Endocrynologist at Children's Hospital (for pituitary), Internist, Cardiologist, a Neurosurgeon at Children's Hosp, and an Opthamologist.  I have also sent her file and CD's of all MRI, MRA, EEG, etc to a Pediatric Neurologist in Ausing Texas who deals alot with Chiari.  So far everyone says that the MRI is clean.

I just rec'd a call from my Niece (in her 20's) who has just started with similar symptoms but less severe and not as long in duration as my daughters.  She said the Opthamologist just told her that she has Psuedo tumor cerebri and is scheduling a spinal tap for her immediately.

My daughter had a spinal tap last week (with major complications and had to have a blood patch done) and the test showed everything fine but the test did not state that the pressure was taken when the spinal tap was done.  I will have to ask Neuro about this.

I am a basket case!!!!  It has been 6 long months and my blood pressure that is normally low is sky high.  I am on Nortriptylene for the stress but is is not nearly effective enough.  I, like so many others, just want an answer.  I KNOW that there is something physically wrong with her and I need someone to find the answer.  

Again thanks for all of your support.  I need someone to understand.
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164435_tn?1377105856
HELLO AND WELCOME.
SORRY YOUR DAUGHTER IS GOING THUR SO
MUCH, HANG IN THERE, I KNOW IT IS HARD, BUT THEY
WILL FIND OUT WHAT IS WRONG. I NO THAT IS EASY FOR ME
TO SAY,  BUT IT TOOK ME 4 YRS AND MANY DRS.
YOU ARE IN A GREAT PLACE HERE.  LOT'S OF WONDERFUL
PEOPLE, THE SURPORT IS GREAT.
SORRY I HAVE NO ANSWERS, ONLY SURPORT.
I WILL PRAY FOR YOU DAUGHTER AND YOUR FAMILY.
GOD BLESS
KITT
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